Simply Dread-Full

I haven’t written since Dad’s hospitalization in late October because, honestly, I haven’t been able to focus on a single issue long enough to write a post. I’ve been living in a bit of a fog for more than 6 weeks now, as Dad made it through 3-1/2 weeks in the hospital and, now, another 3 in rehab. We’ll be coming to a decision point soon, though, regarding Dad’s eventual living situation, and that fog is shifting in nature, from confusion to dread.

As a catch-up, it turned out that Dad did, in fact, have a tumor in his colon. This isn’t a complete surprise – back in February, he had a stool sample test positive for blood, but he refused to have a colonoscopy (read about it here). The tumor was discovered during surgery, a procedure necessitated by the fact that his colon was completely obstructed, causing pain that not even morphine could ease. On the plus side, the surgeon was able to get the entire tumor, and it appears the cancer hadn’t had a chance to spread. On the negative side, though, Dad woke up with a colostomy bag, which is likely to be permanent, since reversing the colostomy would require him to have similar surgery all over again. Because this surgery nearly did him in, it’s doubtful the surgeon would want to repeat the experience.

A number of complications arose post-surgery – he developed thrush in his mouth and throat, which made eating almost impossible for a couple weeks, so he lost more than 20 lbs., and he also developed a case of c. difficile, which is a kind of bacterial diarrhea that can crop up when you’re taking major antibiotics. He was transferred to rehab while still dealing with those issues. His first week or so there were pretty un-productive, but in the last two weeks, he’s gotten on-board with physical and occupational therapy and has actually walked 20 feet or so with a walker.

So, you might ask, with all that progress, why the dread?

At some point in the not-so-distant future – possibly as soon as five days from now, or a week after that – Dad’s going to hit a plateau, at which point his insurance will require him to be discharged… but, to where? I have serious questions about him coming home, but I’m tearing myself up inside knowing that the only alternative is a nursing home – possibly, the nursing wing of his current rehab center.

One big reason for my concern can be boiled down to a simple two-word phrase: the bag. Dad will be 90 next month and has never been what one might consider fastidious. His hands shake picking up a glass of water these days, so, obviously, motor skills are an issue. Even if he’s able to get up out of bed by himself at discharge, his balance will still be compromised. And he’s demonstrated, over and over again, his inability/refusal to stick to health professionals’ instructions for more than a week or so. To me, this all paints a picture of a guy who may be able to pass a nurse’s scrutiny on any given day, but will fall apart after a week or so at home. And I, then, will be the only back-up guy for dealing with leakage issues – or, even, bag explosions (both have happened, even under 24/7 care, in the rehab center), whether they occur in the middle of the night or when I’m in the middle of a conference call.

In addition, beyond the bag, there’s also the simple fact that, despite physical/occupational therapy progress, his health is very fragile. Since his hospitalization, the diabetes that had been merely borderline has become an issue. The nurses check his blood sugar several times a day, and he’s getting insulin shots multiple times a week. Yes, many people are able to deal with blood-sugar testing and insulin shots on their own, but they aren’t learning how to do it all at age 90, with questionable motor skills and even more questionable motivation to stick with the testing routine in the first place. So, again I become the back-up nag/finger-sticker/shot-giver. Of course, his chronic kidney disease, peripheral artery disease and general heart issues also still remain.

Having been through the rehab-center discharge process with Dad multiple times before, I know how the routine works. Once the participants in his weekly case-management meetings come to the conclusion that he’s hit a plateau, we’ll have 48 hours to figure things out. Because of everything I’ve mentioned above, I’ve started the difficult conversation with Dad that home might not be an option when we hit that decision point. And I’ve started the application for the rehab center’s long-term care wing, and started doing all the work to get his finances in order for a possible Medicaid spend-down. Even without all my background anxiety, this would be an almost overwhelming process.

I’ve been keeping Dad aware of what I’m doing, but he seems to think that, if he just works hard enough in his therapy and with the nurse who’s dealing with his colostomy bag, he’ll be just fine at home. While I don’t say anything to discourage him, inside I’m wondering how on earth I’d be able to keep my business – much less a personal life – afloat, with him back in my house. For readers who don’t know this, I work out of my home – the key verb in this sentence being “work.” Running up and down the stairs multiple times a day to deal with blood-sugar testing, toxic-waste clean-ups and general checking-in would destroy whatever concentration I’m able to maintain, given the TV hum that’s become a constant presence in the nearly 4 years he’s been living with me.

So, this is what is keeping me up at night and wrapped up in knots during the day: At some point in the next couple of weeks, in a basement conference room, I’m going to have to sit facing a panel of rehab-center professionals and tell them that – despite whatever conclusions they may have come to, and assured Dad of – that I just can’t bring the elderly father sitting beside me back home again.

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35 Responses to “Simply Dread-Full”

Don’t beat yourself up. You can only do what you can do. Your post alone have help many people. Have you considered a live in nurse? When my father in law first came to live with us, after one week I told my own daughter, when it came time to put me in a home. I know I won’t feel that way then, but now while I can still think, I told her I would not hold it against her. You are doing a wonderful job with your dad. Don’t beat yourself up. You also have a life to live.

It’s more than o.k. not to bring your dad back to your home, so that you can be the only caregiver and not be able to do anything but that. Everything changes with time, and he’ll get good care in the nursing home. You’ve done an extraordinary job with him over these past years, and you are not superman, a trained nurse, or even expected to be the caregiver at this stage. Don’t beat yourself up.

Chuck, I’ve been going through a similar situation (although not quite so dire as your father’s) with my mother these past couple of months. She’s 92 and has lived alone in her own home near us, and wore one of those medical alert buttons for emergencies. On Oct. 22 she fell in her bathroom sometime in the early morning but didn’t use her button. Somehow she crawled to the phone and managed to call me. When I got there she was lying beside her bed with just a pajama top on. The bathroom was a mess.

The EMTs took her to the ER and she was admitted later that day to the hospital. She was there three days and during that time the doctors determined she’d had a mild heart attack. She was doing fine the first couple of days but developed delirium the day before she was to be discharged to rehab. I’ve since read that this is quite common with the elderly because they become disoriented by the strange surroundings. When we left the hospital and arrived at rehab she was really angry with me because she thought she was going back to California that day—we live in Texas.

Everyone at the nursing/rehab facility has been extremely helpful, but I’m most grateful to the physician who was on call at the hospital that weekend when she was admitted. She recommended that my mother stay on in the nursing home following her rehab. She just put her hand on my arm and said “It’s time,” and told me that she would do the same if it were her mother.

We knew that it would take something like this get my mother out of her home and into a care home situation because she would never go willingly on her own. I lived in fear that she would burn the house down with the ancient floor space heater she insisted on using in her living room, among other worries.

What I’m trying to say here (not very well) is that even though your father may not want to be in the nursing facility permanently, he needs to be there–and you can’t change his condition or should you feel guilty that you can’t attend to his every need. You have gone above and beyond the call of duty in caring for your father this far. Everyone who reads your blog would agree with me on that. I think it’s time. Best of luck to you—keep posting. We’re all in this together.

Thanks so much – what a roller-coaster you’ve been through, too. In my work life, I write a fair amount about home automation, and along with praying that cars will drive themselves by the time I’m 89, I’m also hoping a lot of the home medical electronics now being developed are in place by that time, too. It’s just such a tough space for both parent and adult child to be in.

Yes, the parent/child dynamic is turned on its head at this stage of the game for sure. Right now I’ve gotten the wheels in motion for my mother to be transferred to the assisted living facility next door to where she is now. She’s ambulatory, with the help of her walker, and no longer needs the skilled nursing care of the RNs, but the main push right now is that she has a roommate, where she hadn’t had one before.

Consequently, she is not a happy camper and won’t be until she gets a room of her own. All the rooms at her facility are semi-private (an oxymoron if there ever was one—either it’s private or it’s not!) I had to get her doctor’s okay for this move, so I spoke to the doctor’s nurse in person today to get this going as soon as possible. Keeping my fingers crossed that all the stars will align so we can move past this latest “crisis.”

I have been reading your posts right along. Last year my 98 year old mother who had landed in assisted living died…the assisted living was a very nice one…about 2 blocks from my home. she lasted a year there and i went to see her 2,3,4 times a day…
it wasn’t a good year but it was the best we could do. I am not emotionally able to be a physical care giver and your own feelings match mine exactly. I did the best I could. its time..and as hard as that is….you deserve a life too. its his time to face the eventual endings in his life. its yours to support him the best you can and move on. i am so sorry for all your losses…his and yours.

I’m with TTPT and others … your father NEEDS the level of care that can only be had in a skilled nursing facility, or a huge bank account to afford in-home care. And even if he had the $$$$, it still would remain a tremendous distraction from your own life (and means of income). He requires a nursing home. It’s time.

My own mother remains in assisted living, but I honestly believe they are going ‘above and beyond’. She doesn’t have a colostomy, but her need for personal care (change of briefs and cleanup) is quite frequent in the day – and she is also highly tolerant of soiling (poop on her hands doesn’t really bother her). She has been diabetic for many years but at this point can only self-inject insulin if the staff guides her to how to use the pen-type insulin shot.

Have you considered talking to a hospice service? Though many associate hospice with ‘giving up’ on life, studies show people actually live LONGER on hospice than those without. My mother’s hospice services have been wonderfully helpful in weighing options. They employ social workers, chaplains, as well as doctors and nurses and volunteers. Wherever he goes next, if he qualifies for hospice, it can be a boon to both of you, even if only in decision-making. My mother has been using hospice services (paid for by Medicare) for a couple years or so, due to her surviving and renewing her qualifications periodically. I’m very grateful for it. (They also pay for a host of additional expenses – including some medicines, briefs, durable equipment, a hospital bed, bedside commode, wheelchair and more).

You have already gifted your father with a couple of years of your constant support and your life. This has been such a treasure for him, and for you in a way, and you can be proud to have already done so much. But to continue to do so would be unfair to you both – it’s time to pass the baton to those with the skills and resources to support him as he now needs it. It’s time.

And if I could be permitted one more comment… from my reading of your blog, your father is a really social person. He likes being around people, doesn’t he? And from my weekly suppers with my mother at her home, I’ve seen the men (who are much fewer) are slathered with attention from attentive women. “Frank, do you need more crackers?” “Frank, did you get enough soup? Is it too hot?” Then there are the guy-times when these old guys hang out together and joke about their “man-stuff” … women, sports, money …. never too old for that!

And when I come visit, mom and I have a weekly glass of wine (if white zinfandel counts), our own little ‘happy hour’ with a tin of cashews.

This could really work for him in some nice ways, to give him a boost of social interactions in an environment of peers (more or less), with a (mostly) relaxed visit from his son. That can work out way better than having a stressed, oft-resentful and nagging adult child as caretaker, with little respite for either of you.

My heart goes out to you. Tears come to my eyes looking at the photo of you two on your header. No matter what the circumstances, it’s so hard to feel that we have ever given enough and yet there’s the point where we need to give to ourself at the expence of the other person. My mom has Alzheimers which is progressing rapidly right now. I look at myself in the mirror and see how much I’ve aged in the last year and feel that I can’t do this much longer. You’ve have given your dad so much in these 4 years. He’s very lucky. Be easy on yourself.

One further comment… I appreciate what Nancy Newman added, that your dad has a chance now to realize that he is now in the final phase of his life, and to decide how he wants to spend it. Who does he need to say goodbye to? What reflection does he want to do?

It may sound a bit new-agey and, based on what I’ve read since you’ve been writing your blog, I suspect that’s not exactly his style. But he may need a boost to see over the trees, to see the forest for what it is. Or, to just grieve the loss of his younger self.

I know, it sounds goofy, and will be rougher in real life than it is as I wrote above. But I believe with all my heart that, if it were me, I would want to have someone to shake me a bit, to help me awaken to where I am in life, to not pretend that I’m just a slower version of my old self. It’s a passage to a final era, a significant era.

And, to help him know that you will also be ‘with him’, nearby, ready to offer a hand or an ear, or just a good Scotch and a smile. He won’t be alone.

>I just can’t bring the elderly father sitting beside me back home again.

You really can’t, and it seems to be unanimous among folks who’ve followed your situation for awhile … it’s not your fault, it’s just how it is. It’s horrible to go through but there is no other real choice at this point. You’re doing the only thing you can do to get him the BEST care. The fact that he won’t like it is not something you are to blame for or something you can controll

I just went through nearly the exact same scenario–bag explosions and all–with my husband. When I had to confront the committee, this time I had my little speech all written out, focussing on the points you make in the last three paragraphs. He starts out well, follows the regimen for a week, it all falls apart and the most telling point of all: When it falls apart, he is at great risk, because you are not a medical professional. It took some convincing, and I know I hurt my husband’s feelings, but it had to be said.

My heart goes out to you. This is the worst time of all–the transition–and it is hard on you, I know. I wish I could help, anybody could help, but nothing is going to make it better. All you can do is get him the best care possible and monitor the caregivers. Your life is valuable, too.

Okay – I have to say, if he has the money to afford skilled nursing – he has the money to afford a home health aide.

Now. That’s not to say that having another person in your home is going to be easy, or pleasant. But it should be acknowledged that that is in fact a possible alternative. It may not be the *right* alternative, but that’s a different issue.

Medicaid will cover home care services (there is in fact a push to get people OUT of nursing homes, if they have somewhere to go).

And – nothing you’ve described is particularly “skilled” care, with the exception of testing for blood glucose, and administering insulin if necessary.

Everything else is hygeine/safety – and something that a home health aide can easily perform.

In fact, they could most likely do the glucose TESTING, and then only interrupt you if insulin needed to be administered.

Also – as I have an illeostomy bag (have since age 15, I’m 30’s now) .. I can appreciate that problems can occur. Its important to find a bag system that *fits* well. Including all the various items that can be used to ensure a tighter fit.

Also important to change regularly, otherwise the seal will start to break. I change 2x/week.

An aide can easily help with emptying the bag, same as emptying a urinal, or changing adult briefs.

I’m not saying there aren’t challenges, I’m not saying you’re not burned out and deserving of a break. But – for a person who wants to be home, and could be home with nursing assistance – I’m sorry a nursing home is often a death sentence.

And I say this with full knowledge that one day my parents care (both are bed bound, they have an aide who assists) will go beyond hygeine/safety to true medical – and it will be beyond me – and at that point – I will put them in a home.

But not until then.

Good luck to you – you’ve done a great job by your dad. Look into what services in your community (aide companies, visiting nurses, etc..) you can use – if only so that you have a full knowledge from which to make your decision.

Actually, he has enough money to pay for skilled nursing for two months. Then Medicaid kicks in. Medicaid will not pay for round-the-clock home nursing care, which is what is needed if I’m to both have my father at home and continue to be able to work out of my home office. Would I leave my father unattended 8-10 hours/day if I worked in a commercial office? No way, in this situation. Where I live, home health care of the sort willing to do the tasks you describe, starts at $20/hour – if you’re lucky enough to find someone willing to take that wage. For a half day, that’s $240/day – or $60/day less than the nursing home. However, in the nursing home he’ll be getting real medical care. And I’ll be able to sleep through the entire night without having to keep half an ear open listening for his call.

My work already has suffered because of this situation. I own a small (1,100 sq. ft.), 2-story home. I’m a writer with major commercial clients, facing multiple deadlines a month, all of which are critical for me to meet in order to pay the mortgage. The level of daily distraction and interruption already was approaching my limit before this crisis.

It’s great you’ve been able to live so successfully with your illeostomy. However – not knowing your personal experiences – I only can assume that learning how to handle that kind of medical device at 15, with your entire life in front of you, is entirely different game than learning it at 90, looking at a downhill slope.

Your a good child to manage care for two bed-bound parents. The comment regarding death sentences, though, is hurtful. It is not a death sentence. In fact, I’ve gotten several responses to this post letting me know of loved ones that actually have thrived in nursing situations. I don’t know what my father’s outcome will be. But I do know that the facility I’m considering will support him having as active a life as he’s capable of having. I can still drive him to the senior center for his poker games and men’s group, I can still take him out to lunch or bring him over here for dinner – the facility is 10 minutes away. He’ll just sleep somewhere else.

We all have our own stories and solutions in this situation. I appreciate that you’ve done very well in yours. I have thought this scenario through more times than you can imagine over the last 6 weeks. This is what will work for me and my family.

I agree with you about the harshness of calling the nursing home a “death sentence.” The only death sentence your father has been given comes in the form of his being a 90 year old man with diabetes, kidney and peripheral artery disease, heart issues and now a colostomy. How much more, in a.e.b.’s opinion, is required of you before you’re allowed to ask for help?

For Chuck’s dad, and for Chuck too, a nursing home might be the best place for dad to face his inevitable ending. Every one of us is going to do the same thing- where you do it is not nearly as important as how you do it.

I don’t really have anything to add, except that you can’t really take care of your Dad if you can’t take care of yourself. It’s sounds like it would just be too much for you to handle at home. He needs to be somewhere where his needs will be met and he can be properly cared for, and you can’t do that and work and take care of yourself, also. My thoughts are with you.

I’ve been where you are, it’s horrible. But nothing you can do will change things, the end story will be the same. Your father needs you to be strong enough to give him the care he truly needs, at the nursing home. Please try to do that for him. Children don’t always understand or like the life decisions we make for them, and the elderly are often in the same boat. But it has fallen to you, don’t let him down.

Without denying that there are some bad nursing homes, and there are some people who go downhill rapidly after entering a nursing home, it also seems to be an open secret that some people thrive in nursing homes (at least, in comparison to how things would go for them if they were still at home, or in an adult child’s home).

When my father went to a nursing home, I found it to be a paradox: he was in the worst shape of his life, physically (mostly paralyzed), and ought to have been utterly miserable, yet in reality, he was pretty happy to have so much attention. He pretty much had constant company and social stimulation, whereas at home he had become rather hermit-like.

It also seems not to be spoken of that old men enjoy the continual ministrations of the aides, who are often young women. It’s a package deal: obviously, many are intensely uncomfortable with having so little privacy and so little control over bodily functions. The consolation prize is that a guy can kind of get used to pretty young gals who come in every couple of hours and, well, tend to you …

My dad’s stay in the nursing home was also good for my mother, who visited him most days. She got out of the house and socialized more in those 14 months than in the previous several years. (Now, unfortunately, he is gone and she is back to sitting home alone. I wish she could still go to the nursing home every day!)

Just for the record, though, the nursing home was very receptive to that. They’ve apparently had other spouses sort of become members of the community and continue coming in after their spouse dies. She wasn’t exactly volunteering, really just visiting, because she had made friends there. There are still some folks she writes to, and one old guy whom nobody visits that she sends chocolate to.

For all the bad rap nursing homes get, there are lots of little stories like that. The nursing home my father was in was far from posh (Medicaid), but they were really good to him. There were a couple of people who were snotty and cold – nurses, frankly – but also a lot of people who really had hearts of gold and knocked themselves out to try to help my father or at least make his life a little pleasanter. The social worker was a gem, the physical therapists were wonderful, many of the aides were wonderful. One of my father’s best buddies was the cleaning lady. She had no obligation to him in any way other than mopping the floor, and I’m sure her pay is pathetic, but she made it a point to chat and joke with my father every day.

Of course they had no obligation to my mother at all, but they cared about her too. More than once the social worker or the nursing director would call me to ask if my mother was ok, if they hadn’t seen her for a couple of days or thought she wasn’t looking good.

Sorry probably too much information, but if Chuck is facing this, perhaps helpful. Nursing homes are a really mixed thing, it could be awful, or it could be heaven sent, most likely something in between.

Diana,
I think your posts and your information are helpful to all- I know I appreciate hearing what you have to say.
For almost 10 years I worked as a therapeutic musician (with therapy-greyhounds) in many nursing homes. I saw lots of different situations, met many people, and overall had a really good experience- so much so, that I now work as activities/marketing/development coordinator in one of the nursing homes I played in (though I’m on the independent/assisted living side.)
Personally, I think nursing homes do much more good for many people than most of society realizes. Friendships can be formed at any age and there’s much to be said for being with your peers, and others, no matter what stage of life you are in.
My strongest impression is that we dread nursing homes because we dread facing end of life. But often we fear what we needn’t have…
Karen

Yes … I don’t want to paint too rosy a picture, ‘cus I definitely know there were long periods of loneliness for my dad, or misery on waking at night alone, with his wife of 50 years just a few blocks away, but that’s not the same as being there. But I also know he met people, made friends, and actually had experiences he wouldn’t have had at home – like the music therapy, for instance. There should be WAY WAY more of that in nursing homes. I remember when a harpist came to play for the residents, the look of delight and joy on my father’s face. It’s just too bad there couldn’t be more of it … we sure have our priorities mixed up in this society!

The music and the animals – there were several people who regularly brought in their dogs, and that always brought smiles even from people who usually seemed miserable. My father loved the dogs.

I work at a nursing home and with patients with the kinds of issues your father is having. And my father has ALZ and is in a facility himself.
Dear friend, it is time to put him in a facility. I encourage you to spend your time finding a great facility, read the medicare grades, ask for referrals, talk to the residents, take your dad for a meal or activity there. I have patients who children visit daily or weekly, or call daily.
Caring for our parents can look different, he will make friends and the facility, it will be new at first but stick with it. I SO encourage you, YOU count, YOU matter, you need your space.
It will get better, YOU are right about his care, it is getting too complicated for you and for him. He needs professional support, people who work with this all the time. He will be better cared for medically at one of these facility, they will watch him closely.

I cared for my frail, 93 year old mother at home. Eventually, she became bed-bound and the level of care that I needed to provide even with home health aides and hospice help really increased.
Our hospice nurse said to me, “She can go into the hospice house and you can be her daughter again.” I did not understand, at first, what she meant. I thought all that care giving meant I was being the daughter.
Now I get it and I offer to you,if your Dad is in the nursing home, you will be able to be the son, his child who loves him and is there for him at the end of his life–not his home health aide. So the time has come and it’s okay. Being the son is a good thing! Think of it–a chance to have some interactions with your Dad that aren’t centered around you nagging him about meds, hygiene, or diet. That’s a better vision for your last days together.
Thank you for your blog; I have enjoyed the vicarious companionship of another adult child just trying to do their best navigating the health system and the medical and social needs of an elderly parent. I also second the advice to consult with hospice–they can be as helpful to you as they can be to your dad.

You’re doing a beautiful thing, taking care of him at home, and you’ll continue taking care of him, in a different way, once he goes to the nursing home. You and he both are lucky to have each other and have this time together, to care for and be cared for. I wish you both a smooth transition.

Katie is right: You will still be a caregiver, for better or for worse, with your father in a nearby nursing facility. You’ll still be his visitor, advocate, monitor, transportation provider and link to his past. To place someone in a nursing home is not to abandon him. But you will have the ability to schedule much of what you do, and that will allow you to continue your work, get a night’s sleep and maintain some sanity. It’s not what you wanted or planned for, but if you find a quality facility and you continue to oversee his care, you will be doing what you need to, for him and for you. Godspeed.

Argh. I am so sorry it has come to this. It’s especially hard for you because you are alone, and you’re working. My husband and I are moving his 97 year old mother to assisted living this Thursday. Removing her from the house that has been home for 50 years is difficult, but it’s time. From what you’ve written, it doesn’t seem doable for your Dad to be at home, and for you to maintain the business that makes the home possible. Cut yourself some slack, and remind yourself you can only do so much. After awhile, you need help. I think of you as we go through this process, and all of the others who are doing it as well.

You’re facing probably the most difficult decision you’ll make. My sister and I made the same decision a year ago this Friday. Now we know we made the right choice, but at the time we were as exausted and torn apart emotionally as you are now.

Looking back over the past year, there have been unavoidable declines, but on the whole Mom has had a lot more FUN than she would have if we’d been able to keep her at home. She enjoys live music, crafts, stories, visiting with therapy animals, and even wheelchair squaredancing. Her default expression is a smile that lights up my day (v.s. the scowl she had living at home).

The stress doesn’t go away after admission, but it’s more manageable. We’ve become “helicopter” daughters. We’re constantly checking and following up on Mom’s care. The difference is that the time we spend with her (40+ hours a week between the two of us) is now quality time.

Life may not be terrific for our tiny family, but for today it’s the best it can possibly be and we have no regrets. Whatever the outcome, I hope you feel the same way this time next year.

Please be as kind and caring with yourself as you have been with your father. I know from personal experience that it is much harder to give yourself permission to take care of your needs when it feels like you are failing your parent if you do so. All the commenters before me have said what I believe so beautifully that I can only add this…allow yourself to see the wonderful care you have provided your Dad thus far, and know that the decisions you make in order to provide for his changing needs are still guided by love.

By now the decision likely has been made. As some earlier writers said, you are still his caregiver when he is in the nursing home – but you are not the first responder to every single need! Many elders do better than we expect when arriving at a nursing home, as other writers have clearly described. (Sometimes they don’t want their kids to know, so you get the frown and the complaints – check with direct care staff for what he really is like when you are not there.)You get to be a care manager AND a son, and you begin to get some of your life back. You have given up so much already to care for your dad, please don’t feel you should have done more. (even if he tries to lay a guilt trip on you!) If he is saying he wants to go home, that’s ok – you’d want that too if you could arrange it, but it is not possible. He needs access to a nurse (RN or LPN, not just a HHA willing to overstep the legal boundaries) who can assess changes in his condition and intervene as needed. The best way to ensure that he has good care is to visit often, on a somewhat unpredictable schedule, and get to know some of the staff on his floor. Having hospice involved can be helpful, esp. if he wants to talk with SW, chaplain, or trained hospice volunteers about end of life/dying/spiritual issues. Sometimes hospice RN can recommend comfort measures that the nursing home staff might not think of, or may need a push to adopt. Let us know how you are doing, and take good care of YOU.

Hi Ive been reading your blog for the past few months. Going through a very similar situation with my grandmother who I am the primary caretaker for. I too am single but was not residing with her. My soon to be 90 yr old gram just had the same surgery as your Dad in Boston and was hospitalized for three week. She is currently in a sub-acute hospital and will most likely be returning to the nursing home rehab. She was only in the nursing home for a few weeks prior to this last hospitalization. And I havent had the “offical talk” with her yet. Its been a long year of hospitalizations, ED visits, Dr appts etc. That I am sure you understand.

Good luck to you and your Gram, Mel. Very parallel situations – my father turns 90 next month. You never know, she may come to the conclusion herself that she needs more help than home health can provide. My father is still in rehab, but I think they’ll be discharging him either next week or the week after. I think he’s beginning to see that my house may not be a possible option once that happens.

You need to do what is best for both of you and recognize the limitations of the situation. The key is to make sure that he continues to receive quality care. You can remain an active participant in your dad’s care without sacrificing quality. I am very familiar with the facilities where you live and pretty much without exception, he will get the care and be safe. Good luck to you and thank you for your posts.